Vanessa’s story

Vanessa Boyd, 28

My life has never been what you would consider ‘normal’. Here’s the long story why, if you want to read it:

I went on holiday on my 16th birthday with our Kez and unknowingly contracted a disease.It all began with a rash that was diagnosed as something else. The infection could have been stopped at this point if diagnosed properly.

I developed painful feet and knees, so intense that I went to the doctors asking for pain relief on several occasions. I never got it. I still have this.

Weeks later, I awoke with a fever and couldn’t move my head, my neck, my eyes, look at bright lights, or listen to any noise for 3 days. I was too poorly to even be taken to hospital. But, after a needle in my spine 4 days later to examine the fluid surrounding my brain and central nervous system, (which controls every aspect of your body), and a normal brain scan, I was told by the neurologist, “you have a large chemical imbalance in your brain, but we can’t do anything about it”.

Despite the tell-tale rash and trip to America (a high risk area for Lyme Disease), I was not tested for Lyme. I was sent on my way with no treatment, no advice of warning signs and no follow up. I was diagnosed with ‘viral’ meningitis (meningitis is another prominent sign of Lyme disease when it goes into the brain) but I was NEVER informed of this, and only found out when I paid for my medical records last year.

Intravenous treatment at this stage could have also rid of the infection.

I developed chronic fatigue and would fall asleep at the drop of a hat. I slept through lessons, alarms and was late for everything.

I suffered with shooting, stabbing pains in my head that would make me cry out in pain. This still happens to this day. I used to put this down to the ‘chemical imbalance’ that I assumed I would have for the rest of my life. My sister Maria, always used to say ‘there’s something not right with you’ and even came to one of my doctors appointments because she couldn’t believe my later diagnosis. I became very clumsy, my siblings called me Frank Spencer.

I passed my driving test at age 19. I had a job in Civil Engineering and was working my way up the ladder. I loved to drive wherever they sent me.

At age 21, I was on a plane, on my way on holiday when suddenly everything around me started to spin, my vision went cloudy and I found it difficult to breath. Doctors diagnosed ‘panic attack’. I now know it was due to the reduced oxygen in the cabin and the consequences of the changes in air pressure on the swelling around my brain.

It then manifested itself in my beloved driving. Violent attacks of vertigo, mostly when driving on the motorway and attacks of air hunger, jumping, skipping heart beats and blurred vision, also when at work on the computer or at home watching the TV. Visual stimulation. I didn’t realise this at the time.

The fatigue was still there, I would often go for a 15 minute nap in the office toilet, resting my head on the toilet roll dispenser.

I went to my GP again. The cycle of ‘anxiety’ and ‘panic attacks’ was explained to me. I said, ‘I am not an anxious person’ which was entirely true. I was prescribed an antidepressant which caused me to have manic behavior and gave me a seizure at work (although I didn’t know this at the time, all knew is that it was horrendous). Hence why I never took that tablet again even though they tried to give it to me later down the line.

I called the doctor, worried for my health (now I know I had a seizure). I was laughed at, ‘panic attack, come in tomorrow.’

The person who kindly followed me outside, wanted to call an ambulance or go out of his way to drive me the long road home (opposite to his). Not wanting to admit I had ‘anxiety’, I drove home after the seizure, and said thank you, I’ll be fine. I went on my way on the motorway and sure enough got the dreaded vertigo and had to pull over several times to be sick and sit on the bank. How would I have gotten to work the following day without my little Clio.

Several visits to the GP later, and it was decided that it was all stemming from my subconscious and underlying worries, because they knew my mum died when I was 7 and that I was gay (after asking if I was in a relationship). I was advised to ‘see a priest’, I politely declined and was then referred to Mental Health Services. My GP had convinced me, I had an ‘anxiety disorder’. I went to counselling once then never again. It wasn’t going to help me.

I told the GP about all my problems with varied hearing, fatigue and all the stuff mentioned above. I returned on over 20 occasions.

Then, a numb ear for 3 months. The usual ‘don’t worry about the numb ear’. No referral.

It became dangerous for me to drive on motorways so I knocked that on the head at age 22. I would have to get up earlier with my chronic fatigue and figure out another scenic route to get to work, or site. Once it took me 10 hours to get home instead of what should have been 3 from near London. I now know that my brain couldn’t handle the patterns of the cars, lights and gantries on the motorways causing seizures. It wasn’t my fault, like I was led to believe, this was a type of seizure.

At age 22, I had another brain scan (an emergency self referral). It was found that I had ‘mild shrinkage of the brain, unusual for someone of my age’ and I was given a letter to take to my GP advising her to ‘keep a close eye on this young lady’. This letter seems to have conveniently disappeared from my medical records. I flew to my GP with the letter, ‘you’ll have been born with it’. I was made to feel stupid.

In my medical records, received last year, it was written ‘came in worried about brain atrophy (shrinkage), brain scan normal at age 16? I will check with neurologist and feed back.’ This was never discussed with me, and never done. I was put on another antidepressant which I took for years and it caused me to put on 3 stone in weight.

I remember when I stopped taking the masking antidepressant that only helped me to sleep. It had sucked my emotions out of me, and I found myself bawling my eyes out to a UB40 song a few days later. Tune!

One of the parts of my brain damage, is the area that controls vertigo. Now I know that shrinkage of the brain is a significant symptom of a disease in the brain as well as numbness and all the other utter hell I was going through.

I became a master of hiding my symptoms, or walking away when I felt them coming on. After all it’s under my skin, I look fine and a smile goes a long way. My mask. I always wanted to be seen as strong and independent. Not ‘anxious’ or ‘depressed’ because I was wasn’t.

Busy places, like bars with my mates and the tv would unknowingly trigger seizures. The seizures I didn’t even know were seizures. I would have a few drinks to help relieve them. I have at least 5 types of seizure. Wow.

I became a Civil Engineer, something I had worked hard for, for 7 years but my symptoms were getting worse.

One day, I was sitting at my desk at work when I felt something warm running down my face. I wiped it with my hand. It was blood and it was coming out of my ear. Another trip to the GP, ‘I don’t know what would make you randomly bleed from your ear’. No referral.

Work asked me to go on a 9 hour flight, to an island where I would work and stay for a while, on around triple pay (and with an amazing sea turtle colony). I was at war with myself, after all, everything was ‘all in my head’ right and I was desperate to go. After a week of deliberating, I had to say no. I was disappointed to say the very least and embarrassed to my core in front of the bosses I had impressed enough to ask me to go.

I was misdiagnosed for 12 years with ‘generalised anxiety disorder’, and sent to a cognitive behavioral therapist, who encouraged me to drive on motorways at age 27. I would have done anything to ‘get better’. I tried, tried and tried again with no success and lots of horrid vertigo and other symptoms. Dangerous for me, dangerous for other drivers.

On many occasions I ran out of the house and laid on the concrete floor waiting for the seizure to pass, I desperately wanted to be cold, trying to breathe or I ran to the park and walked around in a manic hot, clammy state. The vertigo isn’t just horizontal, it’s vertical too. Like someone ripping a rug from beneath your feet. On most occasions I couldn’t feel my feet on the floor like I was floating or wearing sponges on my feet.

My eye sight deteriorated over night. One day, we were in Pizza Express when suddenly, I couldn’t read the menu or see anyone’s faces. I cried.

I bought some prescription glasses, the optician asked if they helped; they didn’t but apparently I had committed to buying them, as they had inserted the lenses. My vision is blurred/ double. I always thought, it was normal to see to see 2 tennis balls coming at you in a game. 🎾🎾 Apparently not. Things had changed so much over time, I’d forgotten what healthy felt like.

Only I knew what I was going through, the people close to me and the ignorant doctors, as the disease continued to thrive in my system and gained complete control of my life.

I would go outside and pace around not being able to see properly, surrounded by a fog, brain fog. On my dinner break, I would often just pace around one street in the fog that surrounded me. I got seizures in the busy train stations, after all it was safer then driving. I developed head throw backs when I scrolled on the computer at work and even my own reflection in the mirror would give me a full body convulsion.

My symptoms got so bad that I couldn’t leave the house, I had head and body tremors in my torso and ribs, a numb ear AGAIN and numbness/ tingling all over my scalp and forehead along with many other symptoms.

I could no longer work and I knew it wouldn’t be long until we couldn’t afford to live in our own home.

Eventually last year, I finally saw umpteen ‘specialists’ (neurologist, cardiologist, ear nose and throat, infectious disease etc etc) none of whom could work out what was wrong with me. After about 30 blood tests, I was again told. ‘You have a deep underlying psychological problem’ and that there was nothing ‘organically’ wrong with me. It was said that ‘it is unusual for a woman to be a Civil Engineer’ what?? And could I be referred to a psychiatrist? I strongly declined which turned into an argument.

One GP got so angry that his hands were shaking and he said, ‘do you know how many times I hear this crap a week, they’ll have read your scan wrong.’ That was after waking up with a crawling sensation all over my body.

Lots of people I was close to thought I was having a nervous breakdown. Some said it directly, some I could see it in their eyes. About what? I have no idea. I only had a happy relationship, a good job, 2 fantastic cats and a free range rabbit. My only stress was not knowing what was wrong with me and the continual, worsening pain, an entirely normal reaction by anyone’s standard. But not being believed was the worst part. A few stood beside me, believed me and were there.

Me and my partner went away for 4 days. Both of us thought I was going to die. Fits in the night, drenching night sweats, tremors, neuropathic pain and waking up gasping for air in the night. I was screaming in pain all the way there in the baggy bus we had borrowed. Noone to help us. We knew calling an ambulance wouldn’t help after numerous trips to the hospital. A total loss of faith in the system.

My partner, Laura used to wake up in the night to check I was breathing. She still does.

After 6 visits to the same neurologist in the hospital of nightmares, I finally got my wish of another needle in my spine and a detailed brain scan. The fluid around my brain was analyzed and it was finally said that I have ‘a disease of the brain and central nervous system’ and that my brain had gone from being normal, to mild shrinkage, then to moderate shrinkage with some scarring, after 13 YEARS of being ignored.

The problem was, they couldn’t work out which disease I had and said it could be so rare that they may never know.

When life became too unbearable to live, I ‘googled’ my symptoms. I had never done this before as I was brought up to respect and listen to my doctors. There it was… Lyme disease.

I requested tests from my new GP and I paid for a test privately (same as an NHS test), my neurologist also tested me for Lyme via my request and said, ‘I’ll test you, but it will come back negative’ under his breath.

After more tests, the neurologist said that the Lyme disease test was negative, along with a load of other tests like HIV, autoimmune diseases etc. I asked to look at the paper, which the neurologist had turned upside down. It was reluctantly passed to me, and there it was ‘POSITIVE’ for Lyme disease in capital letters. Why would a neurologist lie?

I got my other 2 results back, POSITIVE. I was then given an intravenous drug on the NHS for 6 weeks.

No change to my rapidly deteriorating health.

Hospitals know what to do if you get bitten by a spider, a snake, but a tiny tick, (so easily attached, poppy seed sized with a painless bite which likes to hide on the body or in the hair), and it is claimed they have no idea. Vets treat animals for Lyme disease all the time. Maybe I should have gone there…

I was told, while begging for more treatment with my Dad and partner that ‘I would likely become increasingly disabled, and that was probably worse than dying.’ FAB NEWS at was 28 years old! Great chat.

We lost everything, but what is everything? Our jobs, our home, my ability to drive, my independence, my life. My partner is now my carer with 4 hours of IV meds a day, so many tablets, we have to set alarms. Yes I want to get better but I’m tired after 13 years of utter crap and angry about what has happened to me.

I will never know what I could and should have been, and now I don’t know where I belong, if anywhere. My life was stolen.

Because of the brain damage, if the treatment is a success, I will always have problems and the treatment will take a good few years.

What is sad is that you need a piece of paper to prove you are poorly or literally close to death. I had to fight for mine, as do most. I had to fight with private health care in the end, imagine being in this position on the NHS. No chance.

We have moved temporarily to America to see a top specialist in an attempt to save my life. We will have spent two Christmases by the time we leave. There are no Lyme specialists on the NHS. I will have to come back to the US every 9 months on a boat there and back, 7 nights each way to see the man who wanted to give me a life. I refuse to live part of one.

We now have to rely on donations, kind people, family and friends for my treatment and a roof over our heads with a gluten free diet and organic food on the table. Doctor’s orders.

Broken body and a broken heart.

Love to all with a life threatening illness, it’s hard in every possible way. Luckily most have something to hold on to. I’m not sure I have.

I’ve not written this for sympathy or likes, just to tell my story and this is only part of it.

The photo is me when I could drive my little Clio, probably at 19 years old.

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